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mcaimless

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  1. The rheumy should check you for fibromyalgia tender points if he knows what he's doing. Generalized widespread pain is often fibro. It is common with dysautonomia and often can be a result of poor thyroid function. If he determines you have fibro then he'll try to prescribe the usual fibro drugs, Celexa and Lyrica. I would recommend you get a good thyroid workup, including Free T3, Free T4 levels, thyroid antibodies and check your adrenal function with a saliva cortisol test before succumbing to the meds though-- they seem to work for some but not all and they have high side effect profiles like weight gain. Do your homework first, BigPharma loves to sell drugs for conditions that are often an offshoot of poor endocrine function, which is extremely common and treatable by simply replaceing hormone deficiencies.
  2. My underlying cause of POTS was long-undiagnosed hypothyroidism. I too went to the muckety muck autonomic specialist at Harvard and was told I had POTS, now learn to live with it . This went on and on until I eventually developed fibromyalgia and RA-like symptoms. It wasn't until I noticed Mary Shomon's articles about what a lousy diagnostic tool the TSH is for screening for thyroid disease that I finally caught on. I strongly urge everyone to get their Free T3 and Free T4 levels tested as well as the antibodies for Hashimoto's disease. Doctors don't even know how to correctly read Free T test results so you must also demand treatment if your levels are below the top third of range. I've had numerous TSH tests done and all were "normal" but when I had the actual thyroid hormones tested with the Free T tests, I was at the bottom of or below range. Now I'm having enormous improvement with my natural thyroid hormone treatment. I highly recommend Janie Bowthorpe's website and book, Stop the Thyroid Madness for more information about thyroid and adrenal dysfunction and how to treat them correctly. http://www.stopthethyroidmadness.com/ It's a real shame that doctors don't know how to properly screen for this enormously common disorder while the health consequences for going undiagnosed are enormous.
  3. Most are going over to Nature-throid by RLC Labs. Unfortunately Armour has been messed with by its manufacturer, Forest Labs, to the point where its long-time users are going hypo in it. Also Armour is getting very scarce. I strongly suspect Forest is planning to discontinue it in favor of their synthetics. This is a shame as it's the most well-recognized brand of NTH out there and had a huge following. There is also a very good product calle ERFA Thyroid from Canada that can be purchased online. But I can get Nature-throid at my local pharmacy and my insurance covers it. I did have to talk to the pharmacist and tell him I needed a good supply and while it was a little slow coming at first, I'm not having any troubles now. I wish you luck. I had a lot of problems with stress intolerance too, the slightest thing would set me back tremendously, literally make me feel sick. I think it's because my stress hormones were somewhat high from trying to compensate for my lack of thyroid hormones. I'm finding I'm evening out now and my brainfog is lifting (at last!). Also, you can scroll down when replying to see the posts before yours if you are trying to remember what someone said. It helps me a lot!
  4. I would suggest you ask for a Free T3 and a reverse T3 (RT3). If the actual levels of T3 are low (or your RT3 levels are high) you could still not be optimized on your thyroid meds. The symptoms you describe often are a result of this. I have POTs, palps and orthostatic issues as well as mind-numbing fatigue and found after much searching that this was a result of my hypothyroidism. My Free T3 and T4 levels were very low and they should be in the upper third of range. There are a lot of people who are burning out on T4-only meds like Synthroid. With these meds your body is forced to convert the T4 into the T3 you need for your metabolism, whereas if your thyroid were still there it would be producing both T3 and T4 (as well as other hormones like T1,T2 and Calcitonin). The makers of Synthroid and other synthetics have a lot of influence (and $$$ to influence doctors) and have basically re-written the endocrinology clinical guidelines to exclude the natural thyroid hormones (NTH). But, despite this, there is a large groundswell of people who are getting sicker on synthetics going over to that treatment. NTH contain all the same hormones that our thyroids produce and it just makes sense to me to replace like with like here. Long term use of synthetics tend to burn out adrenals as well because if you are low in T3 your adrenals put out more cortisol than they normally would to try to keep the metabolism working and they become fatigued as a result. I am willing to hypothesize that many cases of POTs and dysautonomia are due to adrenal fatigue and hypothyroidism. I think it would be great if everyone here would get the correct screening for thyroid and adrenal issues to rule it out effectively. It's absolutely amazing how many people are undiagnosed for this condition, some estimate it's in the millions. I highly recommend the Free T3, Free T4, and the thyroid antibody tests (for those who still have a thyroid) TPO-Ab and TG-Ab. Most of us are screened with the TSH only but this is not a reliable indicator of our Free T levels. I was aways "in range" with my TSH while my Free T's were very low and I had many hypothyroid symptoms that cumulated in dysautonomia, fibromyalgia, joint pains and many other disabling conditions. Now that I'm on therapeutic levels of NTH I'm seeing a lifting of all these things. Did you get your vitamin D, B12, and ferritin levels checked recently? Often we have problems absorbing these vitamins and minerals from food and sunlight and most of us are deficient. It's really important to keep an eye on this too if you haven't already. B12 should be well up over 550 (closer to 800 is best) and D should be over 50. Ferritin should be in the upper half of range. I live in Arizona and have a tan and was astonished to see I was actually below range in vitamin D.
  5. I'm sorry, I didn't see on your meds list that you were taking synthroid. I just looked at your dx list and didn't see hypothyroidism. I'm a little curious why you took the saliva test, are you experiencing symptoms? I understand you have high Free T4 levels but have you tested Free T3? Free T3 measures the free or unbound T3 as opposed to the Total T3 (Total T3 is more an approximation of T3 levels). And have you tested your reverse T3? These can all be pieces of the puzzle that might help if you are experiencing hypo symptoms. I do wholeheartedly agree that symptom relief is the key to determining how much thyroid hormone is the right level and you are smart to keep a log of your labs with your symptoms. Many people don't do well on synthroid or synthetics over the long term, hence why I recommended Stop the Thyroid Madness. If you have high levels of FT4 it could mean you are having troubles converting and the long term use of T4 can stress adrenals as well. I have had saliva cortisol tests as well. The first was with Diagnos-tech which turned out to be a bad idea because the results were bizarre, my evening levels were 20x the high range. I read since that they are not recommended for testing due to uneven results. I then restested with a ZRT test and had slightly above range in the AM but middle of range the next three times. This was a relief as I didn't want to have to treat my adrenals as well.
  6. If your cortisol levels are low or below range at any time of the diurnal cycle it's indicitive of adrenal fatigue. One very common reason is undetected thyroid disease. When the thyroid isn't producing enough hormones the adrenals will kick in and produce more cortisol to try to keep the metabolism running as it should. Eventually they get fatigued and you will see dips in the levels or even increases as they try to keep up with both metabolic and stress demands. Most doctors do not effectivly screen for hypothyroidism. TSH is a bad test because not only are the ranges not correct (truly normal TSH should be between .3 and 1.5-- but even this is not truely useful if the patient has hypothyroid symptoms or Hashimoto's disease). TSH is actually a test that measures pituitary function, not thyroid. To really find out if you have hypothyroidism you need to have a Free T4, Free T3 to get the level of your actual circulating (or "free") thyoid hormones. These levels need to near the top of range to be at a therapeutic level. Most people are tested and are in the bottom half of range and proclaimed "normal" by their doctor, when they actually are very hypothyroid and need treatment. Failure to treat both adrenals and thyroid will have very serious long-term health consequences, including heart disease, depression, dysautonomia, infertility, etc. If you have adrenal fatigue you should treat with hydrocortisone at physiologic dosage to give them a rest and allow them to heal and then start with thyroid treatment. If cortisol is low, thyroid hormones will not be able to transfer from the blood into the cells where they need to be. If you are taking Florinef it will skew your saliva cortisol test and produce a false high reading. One needs to be off all steroids before taking the test. There's lots of good info about adrenal fatigue and thyroid at http://stopthethyroidmadness.com
  7. I have done a 3 month trial of LDN (mostly for my fibromyalgia) and am now discontinuing, mainly to see if I worsen in any symptoms. The benefits, if any, have been very slight for me and it's hard to tell if these are normal variations in my usual symptoms. There is a recent Stanford study that showed good results for fibromyalgia patients and there is a lot of anecdotal evidence that it works well for Hashi's (but if taken for Hashi's along with thyroid replacement, one must be careful as the thyroid can start functioning well again and there is a risk of over medicating, so the meds need to be backed off accordingly) I have never tested postive for Hashi's antibodies but I am very low in T3 and T4, thus hypothyroid. I am currently taking Nature-throid desiccated porcine hormone replacement. Armour Thyroid has been the natural thyroid hormone of choice for many, many years but unfortunately Forest Labs, it's maker, has royally screwed up in many ways. First they made many dosage sizes unavailable for months and then they reformulated and the new product is not working. People who have taken Armour for years or even decades are now experiencing hypothyroid symptoms and their bloodwork shows much lower T3 and T4 levels. Forest is not owning up to any of this but all the natural thyroid advocates like Mary Shomon and Janie Bowthorpe are urging the switch to RLS Labs' Nature-throid or Westhroid (Nature-throid is hypo-allergenic, which Armour was not, so you might want to give it a try). I have no problem with a porcine derived product and with its processing and USP regulated purification, there is no possibility of swine flu. Thyrolar is a synthetic, also made by Forest Labs that combines T4 and T3 and if one cannot tolerate natural thyroid it's a good alternative. It does not have all the natural trace hormones produced by our own thyroids like T1, T2 and calcinonin. http://www.stopthethyroidmadness.com/armour-vs-other-brands/ http://www.ldninfo.org/
  8. Canary Club is just another place to buy OTC adrenal tests. The tests are by ZRT (which is a good lab) but they offer the best pricing, better than buying from ZRT direct. No cost to join, just set up an account. Not all states allow OTC saliva tests without prescription but most will. The diurnal cortisol test is considered a good one for overall adrenal function. Your endocrine system encompasses both the thryoid and the adrenals to maintain your metabolism. Cortisol from the adrenals is necessary to facilitate the active thyroid hormone, T3 to pass from the blood into the cells. If you are deficient in cortisol you will have hypothyroid sympoms even when you suppliment with thyroid hormones. Therefore it's recommended to treat any adrenal problems before starting thyroid hormone replacement. Many do very well with natural thyroid hormone for Hashi's. And it's agreed that you need to get the replacement amount high to shut down the thyroid and help stave off the antibody attack. Stop the Thyroid Madness recommends that natural thyroid hormone be raised to the alleviation of symptoms, and that thyroid hormone level labs are largely useless for monitoring. Selenium is a good suppliment to take as it can lower antibody levels. There is also very good anecdotal evidence that the use of Low Dose Naltrexone is working for Hashi's by modulating and repairing the immune system dysfunction. Natural thyroid hormones also replace trace hormones your body needs for good metabolic function, like T1, T2 and calcitonin, which is good for bone health. Synthetic hormones are only T3 or T4 and not considered a good long-term replacement for thyroid hormones by many. Long-term use of T4 only meds can cause adrenal fatigue and actually make people sicker in the long run. This is, of course, the point of view by the natural thyroid homone proponants. The synthetic hormone proponants say that their way is best, and most mainstream endos refuse to even discuss natural thyroid with their patients. Unfortunately there aren't any good studies comparing the two in the long run. Natural thyroid is very cheap and there's no money in it for Big Pharma and the studies they have funded are very slanted and poorly done. And Big Pharma, in particular Abbott Labs, the makers of Synthroid, has pretty much hijacked the entire thyroid hormone market and funds all the major endocrinology societies, including the American Association of Clinical Endocrinologists (AACE).
  9. Have you checked your adrenals? The most common reason people don't do well with thyroid replacement is adrenal fatigue, usually brought on by untreated or poorly treated hypothyroidism. Get a saliva test and make sure you are producing enough cortisol-- if you are low in cortisol you will not be able to get the thyroid hormone into the cells. This results in the hormones building up in the bloodstream and cause hyper-like symptoms you are experiencing (it's called "pooling"). I found the best price on saliva cortisol tests are through the Canary Club. I also highly recommend Stop the Thyroid Madness as a good guide and treatment protocol for both thyroid disease and adrenal fatigue. http://www.canaryclub.org/home-test-kits/our-test-kits.html http://www.stopthethyroidmadness.com/hashimotos/
  10. A couple of things (and yes, I do have POTS too), have you checked your adrenal function? Since you are on T4 as a medicine, you might be fatiguing the adrenals when your body is attempting to convert the T4 to T3. This causes what is called "pooling" (not the same as blood pooling with POTS) where you are dumping a lot of thyroid hormones because cortisol is low and it's vital to getting the hormones into your cells. The adrenals are best tested with a saliva cortisol test (I get mine through the Canary Club) Also have you checked your free T3 levels? If your T4 is high and T3 is low then you are having problems converting. This might be from either the type of medication (synthetic T4 instead of natural desiccated thyroid), high cortisol from stresed adrenals, or due to vitamin deficiencies, especially D, B12, or Ferritin. These are all necessary to bring up to proper levels to get the hormones into the cells. If you have Hashimoto's (were you ever tested for antibodies?) you can swing from hypo to hyper symptoms (hence the fast heartrate) and this requires some pretty agressive treatment with hormone replacement to get it under control and reduce the antibody attacks on the thyroid I chose to go with desiccated thyroid as my hormone replacement. It contains both T4 and T3 and several other hormones that more closely match what our own thyroid puts out. I think it puts less stress on the body and the reports of those using it are pretty strongly in favor. Many are started out on synthetic T4 since that's what most doctors will prescribe but don't stay well on it for long. I really recommend Stop the Thyroid Madness as the most sane approach to treatment. I hope this helps, feel free to PM me if you have any other questions. Check out the STTM website for a ton of info: http://www.stopthethyroidmadness.com/
  11. One of the most common reasons for hair loss is thyroid disease. I know some here have already been diagnosed but for those who are not, it's possible that you are being told you don't have a problem when in fact you do. Any doctor who only runs a TSH test to screen for thyroid disease is not practicing good medicine. Literally millions are being underdiagnosed and untreated as a result, with very serious health consequences. I recommend you rule out thyroid disease properly by getting the following tests: Free T3 Free T4 Thyroid antibodies: TPO-Ab, TG-Ab TSH And don't let your doctor just tell you you're in range and normal. If you are not at the very top of the Free T ranges you are deficient in thyorid hormones. Anyone higher than 1.5 TSH is also suspicious for thyroid disease. I went a very long time undiagnosed and am finally getting proper treatement. I hate to see others go through what I went through because so many doctors are seriously uninformed about this very common disease. http://www.stopthethyroidmadness.com/
  12. Firewatcher-- your diagnosis mention Hashimoto's. Are you being treated for it? Most are not and are suffering needlessly. Please do check out this site and see if this applies to you-- Hashi's is treatable and you could possibly be feeling a whole lot better! http://www.stopthethyroidmadness.com/hashimotos/
  13. Have you had your vitamin B12 tested? I just did mine and when it came back "in range" at 377 I thought everything was fine... until I read further and found that the lab ranges are bogus. In fact my levels are very, very low and the bottom of range that was recently adopted by the Japanese is 550. The reason I'm mentioning this is because "nerve shocks" and what you are describing are mentioned in the list of B12 deficiency symptoms. I suggest you check it out: http://en.wikipedia.org/wiki/Vitamin_B12_deficiency
  14. I'm not sure if insurance will cover any saliva tests. If you go to a dr who will give you one (as opposed to ordering one online) then it may be covered as a lab test but that's iffy. Too bad they didn't do your Free T3 and your antibodies tests. Being cold and low body temp is classic hypothyroid stuff. But when you get your Free Thyroxine (T4) back take a look at the number and see where you fall in the range. If you're below 50% then you need to insist on getting the correct tests or find a doctor who will order them (the realthyroidhelp forum has a Dr list and you can post your labs there for the "experts" to give you feedback on). Again I'd really do the saliva test if I were you. If you are in adrenal fatigue you are going to feel pretty bad until you get it fixed.
  15. Ruekat, what exactly did you get ordered for the "full thyroid profile"? Some of the tests are very outdated even though they are still being used and if you have Hashimoto's then the TSH is useless. Make sure that they've ordered a Free T3 (FT3), Free T4 (FT4)and the thyroid antibody tests: TPOAb and TGAb. And when you get your results back, please don't necessarily accept the Dr's opinion that your results are "normal". You Free T3 need to be at the very top of range, not just "in range" and your T4 needs to be at 50-80% or range. TSH is not an accurate way to measure thyroid function since it is a hormone put out by the pituitary, not the thyroid. The FT3 and FT4 are the thyroid hormones that are circulating in your blood and are what you need to monitor instead. Your symptoms can be signs of Hashimoto's which include both hyop and hyper thyroid signs like weight loss and cold intolerance. Have you taken your temperature? Low temps are also a sign of thyroid disease. I would strongly suggest you get your adrenals checked as well with a saliva test. You can order one online for around $140. A lot of your symptoms sound like adrenal fatigue too, which can go hand in hand with thyroid disease. Here is a place to look for more info and additional recommended tests: http://www.stopthethyroidmadness.com/recommended-labwork/ Good luck!
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